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Hobbs
Posts: 9
Joined: Sun Apr 17, 2016 4:27 pm

Surgical Removal of Tumour

Postby Hobbs » Tue Apr 26, 2016 3:40 am

Dear Forum Members/Nurses,

I do not know where to begin; but first and foremost, I really feel the urge to thank everyone here - especially the nurses for their kindness towards me.

My mother was diagnosed with Pancreatic Cancer. Here's a brief historic overview before I ask my questions.

OK - I'm not a patient, but I can tell you, this has been an insane rollercoster ride for us; mentally, physically, spiritually and emotionally.

Patient Profile: my beautiful mother: a beautiful, silver haired 73 year old lady. 165cm, 65KG. L2/L3 diabetic. Generally healthy. Home carer to my father. Kindest, loveliest lady you could ever wish to meet.

* Dec. 2015 she feels stomach pains.
* Jan-Feb 2016: she cannot eat much
* Feb 2016: GP tells her that she's fine.
* march 2016: slight noticeable jaundice
* march 2016: does a CT scan at local hospital. They find a lesion in the pancreas.
* march 2016: she is referred to a specialist (pancreatic surgeon) at another hospital.
He tells my mother that she doesn't seem "fit" for surgery, but suggests they do a biopsy to be 101% sure if surgery is even necessary.
* April 2016: Biopsy performed, + Stent inserted (plastic).
* April 2016: After Stent, new CT scan shows simple cyst in liver and tumour size (in pancreas) of : 3.2 x 2 cm
* April 2016: After plastic stent inserted, jaundice reduced, but due to biopsy, my mother was in quite some pain.

In April, my sister and I were looking for all options. We thought that surgery isn't possible, and we were looking at alternatives such as Nanoknife, proton therapy, and even cyberknife.

I came on this forum (a Godsend!), and was given life saving advice. I'd like to not only ask questions here, but perhaps tell others what I've learnt (if it can be of help?)

After the biopsy, she was meant to have a meeting with the Pancreatic Surgeon. I do not know why, or what for. If he was against surgery, then the next step would have been an oncologist.

April 2016: she has a 2nd meeting with the surgeon who tells her the best mode of remedy is to remove her tumour. He promotes the idea of surgery for her. (that was yesterday).

In the meantime (from Feb to April) - my sister had been giving my mother the Gerson Diet. I wanted to do my own experiments, so I got my mum some multivitamins. We bought the entire bitter lemon stock from our local grocers. She's on vitamin C tablets, off sugar, off processed meat, off anything-that-tastes-good or looks as if it could taste good.

QUESTION 1: Does any of this stuff work?

Well, the rationale behind it is that (according to my sister) Chemo does more damage than good, so if we can avoid it, that's better. Has anyone gained anything using these diets?

You are all probably, at this stage, eager to know the medical history of my sister? No. I thought the same as you, but actually she was a high achiever at school, and she's a very sweet girl.

QUESTION 2: What kind of diet do we stick to? We are going to see a dietician, but is there anything we ought to stop doing??

QUESTION 3: Has anyone here had the Whipple Procedure for someone senior in age (68 to 78 yrs)? What happened? How are they doing?

QUESTION 4: They say that surgery is the cure, but 30% live after 5 years.

Can someone translate the above statement of Question 4 into plain English for me? What does that mean? The gold standard to PC cure is a surgery that, if at best, gives you 30% chance of living for an extra 5 years? Is that what it means?

Does this not encourage others to find alternative methods?

QUESTION 5: The nurses on this forum, as well as even patients, are telling me that my mother should have been given Creon, proton pump inhibitors (etc)... but actually she received nothing. Generally speaking, i'm happy with the NHS, but is it our fault that she wasn't given ANY sort of medication at all? Were we meant to ask the Surgeon for something? Does she need to go to our local GP to get these medications??


Anyway, here are the things I've learnt that I'd like to share with you concerning PC:

a) NANOKNIFE BEFORE SURGERY:

Apparently, according to the consultant surgeon, Nanoknife cannot be done BEFORE surgery. It maybe used afterwards.

Why am I saying that? Well, I proposed a strategy that if it were possible, we find alternative, non invasive ways to remove the tumour; if regression occurred, then by that time, my mother would have had the tumour reduced in size, her health improved, making her a better candidate for surgery.

The surgeon said that Nanoknife makes surgery harder as it "hardens" the pancreas afterwards.

[I'm just paraphrasing what the surgeon said].

b) Cyberknife: The day the surgeon promoted my mother in the direction of surgery was the day that the Cyberknife clinic sent me an email suggesting that surgery is better for my mother.

We are seriously looking for an alternative to Chemo. What can we do?? Can Cyberknife be used as an alternative??

If someone told me that standing on my head in a sewer would reduce my mum's tumour, I'd be writing this message upside down; but can someone honestly tell me what works? What does not work?

c) I wish I had spoken to the nurses in this forum sooner.

They are just incredible. I did not know that professionally qualified nurses would respond. I was only looking for guidance from other patients.

Thanks
H

Didge
Posts: 825
Joined: Sun Dec 29, 2013 10:35 am

Re: Surgical Removal of Tumour

Postby Didge » Tue Apr 26, 2016 8:06 am

Hello Hobbs. I cannot do a more comprehensive reply until later as I am on way to work so for now I would say, always take surgery if offered, look at Trace's (Trace not Tracy) story on the website as he has incorporated diet. Outcomes of surgery are affected by how aggressive the tumour is (this will be seen from biopsy although biopsies can be indeterminate). However if the operate they will know much more. Most aggressive tumours come back after surgery hence chemo follow up. I am very familiar with Gerson and generally I am in favour of keeping as healthy as possible in the fight against PC. It is a tough regime though.

Wife&Mum
Posts: 397
Joined: Thu Dec 03, 2015 3:12 pm

Re: Surgical Removal of Tumour

Postby Wife&Mum » Tue Apr 26, 2016 12:44 pm

Dear Hobbs

I offer my answers here based not on any medical expertise but from my experience as the wife of a PC patient who has had chemo, radiotherapy and a whipple over the past 12 months. He is currently doing very well.

Questions 1 and 2. Sorry, I can't advise, but your dietician should be able to provide expert advice - especially if they're attached to your hospital's HPB dept.

Question 3 My husband was 60 at the time of his Whipple but in my Googling I've read about legions of much older Whipple patients who have come through the op well. It's a tough surgery but I agree with Didge that if it's offered you should take it.

Question 4. The statistic of 30% surviving five years - I'd caution not placing too much emphasis on these figures, upsetting though they seem. They don't reflect the use of Folfirinox and Abraxane as these regimes are too new to be represented in the figures. Also there are lots of exciting treatments in development (particularly in the field immunotherapy), and I'm sure what we all want is for our loved ones to be around long enough to benefit from future treatments which are more effective than anything available now.

Question 5 - your hospital's HPB Surgery and Oncology teams should both have the expertise to advise.

I hope this helps.
My very best wishes
W&M x

Hobbs
Posts: 9
Joined: Sun Apr 17, 2016 4:27 pm

Re: Surgical Removal of Tumour

Postby Hobbs » Tue Apr 26, 2016 2:59 pm

Hello Wife & Mum,

Many thanks for your reply! Its very reassuring.

Question 4: The 30% phrase is quite shocking, yes, but the surgeon said he'll give my mum only mild chemo to start off with. Has anyone else had that?

How long has it been since your husband has had the Whipple? Did he start doing chemo and then the Whipple? The surgeon just wants my mum to enjoy a nice rump steak with onions and get ready for surgery.

She has had zero chemo, radiography, medication, nothing. This surgery sounds as if it fell off the back of a lorry. But its on the NHS. Can someone reassure me that everything is OK?

boa
Posts: 128
Joined: Thu Jul 09, 2015 12:13 pm

Re: Surgical Removal of Tumour

Postby boa » Tue Apr 26, 2016 4:15 pm

Hobbs
On the Whipple my husband had it at the age of 66 and recovered well. It is a well established process although it is complex and requires recovery time. I think that the mild chemo the oncologist refers to is gemcetabine which is usually used as adjuvant chemotherapy. From what you say all is progressing well for your mother. Unfortunately my husband died in January 2016 but the cancer had spread to lymph nodes by the time of the surgery.
Catherine

Hobbs
Posts: 9
Joined: Sun Apr 17, 2016 4:27 pm

Re: Surgical Removal of Tumour

Postby Hobbs » Tue Apr 26, 2016 4:44 pm

Hello Catherine,

Im deeply sorry to learn of the loss of your husband; especially after he had the surgery.

The cancer spread to the lymph nodes after the surgery? or was it progressing there unnoticed before the surgery?

How did the treatment fail him?

* He qualified for had the surgery (so that put already in the low percentile range)
* He was given chemo (for any regression).

Did the dissemination of the cancer occur during the Whipple Procedure?

How long was the time from diagnosis to actual surgery?

You have much knowledge now to give. Thank you so much for the kindness in sharing with us any lessons you have learnt from this.

My sincere gratitude,

Hobbs

Wife&Mum
Posts: 397
Joined: Thu Dec 03, 2015 3:12 pm

Re: Surgical Removal of Tumour

Postby Wife&Mum » Tue Apr 26, 2016 6:23 pm

Hobbs, in answer to your question about my husband, he had a failed Whipple followed by Folfirinox and chemo-radiotherapy, then a successful Whipple. Between the failed Whipple and the successful one, his tumour shrank by two thirds, so the treatment worked extremely well for him. He had his successful Whipple in Feb this year and has just started 6 months of adjuvant chemo (Gemcitabine).
W&M x

Didge
Posts: 825
Joined: Sun Dec 29, 2013 10:35 am

Re: Surgical Removal of Tumour

Postby Didge » Tue Apr 26, 2016 8:47 pm

Hello again Hobbs. Now I am home again I can reply more comprehensively. First, sorry you are in this situation. I can see that you are in shock with all that entails so perhaps I can take you through things in sequence. First, your mother will hopefully get the surgery as soon as possible. No other treatments will happen until after the op and when that happens they will give you a pathology report of what they find. That will include type of tumour (almost certainly adenocarcinoma which is the most common and usually found at the head of the pancreas which is where your mother's will likely be if she was jaundiced), what stage it is at (whether it is contained in the pancreas or has spread outside the pancreas which is called local spread as opposed to distant spread or metastatic disease - i.e. to the liver or some other distant place), whether there are any lymph nodes affected and the tumour will be tested to see how aggressive it is (if the cells are more poorly differentiated - in other words they look much more abnormal than normal cells - it will mean it is more aggressive than ones which look not too different to normal cells). So it is pointless worrying about whether there are lymph nodes affected at this point. Surgery will not cause the lymph nodes to be affected - they either will or they won't be. If the tumour is small and they can get it out with clear margins (which means they can take a band of tissue away around the tumour which shows no sign of cancer) the outcome is as good as it gets with this cancer. Your mother will be offered some type of follow up chemo probably (although sometimes people are told they do not need any if the tumour is very small), usually gemcitabine. if there is sign of spread including the lymph nodes, she may be offered stronger chemo, but folfirinox is quite tough so this is where a person's fitness will be taken into account. Gemcitabine and abraxane might be offered.
Your mother's surgeon is trying to make sure she is strong for the surgery hence the 'feed her up' advice. I am not sure if your sister has put your mother on the full Gerson (10? juices a day, coffee enemas, supplements, the vegan diet etc) or if she is just doing a Gerson type diet. To be honest, before surgery I would not go full tilt at it. After surgery, I understand your sister's concern that chemo can be harmful and it is up to your mum if she wants to try something other than chemo if you are looking at adjuvant chemo after a successful op. Otherwise, I am afraid, although I have known a couple of people personally who have recovered from cancer with no other treatment using Gerson, they are a very small minority in the many thousands who haven't. Some people choose to use such diets and other therapies rather than have palliative chemo because they feel better and decide that if they can't be cured they would rather not have the chemo, but that is a very personal choice. Many people choose to add an 'alternative' (and there are many) to conventional treatment as they feel that 'throw everything at it' is a good way to go.
By the way, chemo is not used either just before or just after surgery (I think it is a minimum of 4 weeks off the top of my head) because chemo interferes with the body's ability to heal itself. However, nanoknife is usually performed alongside chemo as it appears to work better.
I have also seen your other post about a cure. There are no guarantees, all you can do is take one step at a time. Although 5 years as a goal seems not too good to you, I can reassure you that is a very good goal and there are new treatments in the pipeline so the longer a person can keep going the more hope there is.
So, first step is to see if your mother gets her surgery and then the next steps will be much clearer and there will always be people on here, pluses the nurses, to help and support you.
Good luck, Didge

Wife&Mum
Posts: 397
Joined: Thu Dec 03, 2015 3:12 pm

Re: Surgical Removal of Tumour

Postby Wife&Mum » Tue Apr 26, 2016 9:59 pm

Great post Didge!

I just want to add to what you say about post-surgery (adjuvant) chemo and concerns that it can be harmful. A 2016 systematic literature review and meta-analysis has come to the conclusion that adjuvant Gemcitabine increases overall survival and relapse free survival in pancreatic adenocarcinoma. Here is the link:

http://meeting.ascopubs.org/cgi/content ... _suppl/330

6 months of chemo is certainly no fun but there's a fair bit of evidence that it's worth the pain.

W&M xx

boa
Posts: 128
Joined: Thu Jul 09, 2015 12:13 pm

Re: Surgical Removal of Tumour

Postby boa » Wed Apr 27, 2016 7:07 am

Hobbs, you asked some questions about my husband's treatment which I think Didge's post addresses. He had the surgery 12 days after diagnosis because he was admitted as an emergency because the stent procedure which had been successful for your mother was not successful for him and he was becoming increasingly jaundiced. Because of where the tumour lay near to veins and arteries the margins (which Didge explained) were not as clear as the oncologist would have liked.

I don't have much knowledge of the Gerson diet other than what I have googled. However, as Didge says the surgeons will want your mother to be 'well fed' before surgery and it is likely that after surgery the dietitian will recommend lots of calories.

I think the one thing I have learned in this journey is that people's experiences vary considerably. W&M gives a great example of how Folfirinox dramatically reduced the size of her husband's tumour. I don't quite read the paper she highlights quite the same way as the conclusions there are a without figures. However, I think the important thing for your mother just now is, as Didge says, to have surgery and take things from there. Don't hesitate to come on here to chat.
Catherine

sandraW
Posts: 1030
Joined: Thu Oct 31, 2013 5:38 pm

Re: Surgical Removal of Tumour

Postby sandraW » Thu Apr 28, 2016 10:37 am

Hobbs,
My husband too had successful surgery, his tumour was on the tail of his pancreas, he was 67 when he had the operation, he was in hospital for 7 days, and within 4 weeks was pottering in the garden. His tumour was very aggressive and 2 of the 7 lymph nodes were effected, he had 3 months treatment of 5FU then it was found his CA19 markers had risen dramatically, and it was found to have spread to his liver. His treatment was changed over to Folfirinox for the next 3 months, and his he tumours shrank by 50%. He then had 5 months without treatment, when he felt incredibly well, only to find the tumours had more than doubled so he went back on Folfirinox again. He had another 8/9 treatments then it stopped working, he passed away 20 months after his surgery, but he had been pain free until the last 8 weeks of his life, which was a massive bonus.
I hope your Mum gets her surgery soon and that she is one of the lucky ones, and makes a full recovery.take care sandrax

PCUK Nurse Jeni
Posts: 1014
Joined: Mon Jun 14, 2010 12:30 pm

Re: Surgical Removal of Tumour

Postby PCUK Nurse Jeni » Thu Apr 28, 2016 11:30 am

Hi Hobbs,

Aware we have corresponded via email, but you have posted several questions on here.

Something to note about cancer, any cancer, not just pancreatic, but in particular pancreatic cancer - there are no guarantees about anything unfortunately.

We can offer the very best treatments we have - such as an operation, followed by chemo to "mop up" any residual cells, but even this sometimes is not enough. The cancer can still come back, any time, any place. There is not much which a person can do to prevent this - this is the nature of what you are dealing with.

The survival statistics for pancreas cancer are very poor, even in the case where someone was able to have surgery to remove it. It can still come back.

We have already discussed diet - you won't find any (conventional) health professional recommending Gerson diet in any type of cancer, ESPECIALLY in pancreas cancer, where patients are already at extreme risk of gross weight loss due to Pancreatic Exocrine Insufficiency (not enough enzymes), malabsorption and malnutrition. I have written to you about this (email). To add to this, I have searched for evidence of this working in "curing" cancer - the type of evidence which is produced after clinical trials etc....I intent to continue searching for this, so in case others find it before me, I am not quite finished on this search, but wanted to reply to Hobbs!

Chemotherapy affects all rapidly dividing cells in the body - hence why you get side effects! Many chemotherapy drugs are made from natural agents, such as periwinkle plant, Yew tree etc...It works because it has been tried and tested - there are research studies done about it, it has evidence. However, again, its limited, and can only do so much - sometimes, as in the case of advanced disease, it doesn't do too much at all - but this is not a reason not to give chemo, otherwise if we thought "it might not work", no one would get chemo. Most side effects can be managed effectively, and the human body can recover itself with good nutrition, rest, hydration, exercise, etc.... Whether the chemo is mild or otherwise depends on what chemo is used for that particular disease - and what we give is based on a persons fitness (again, I have emailed you this in the WHO - performance status).

We seldom use the word "cure" these days when referring to cancer, because we have realised that cancers can even come back after more than 15 years, so you can't say you have "cured" someone - we use the word "remission" - remission can be for a short period of time, or a longer period - its basically time free of cancer & its effects.

The surgery has not "fallen off the back of a lorry" - although, it is so extensive, you might be excused for thinking it sounds "old fashioned", but this is exactly what is used in treating operable pancreas, bile duct or gall blabber cancers, and some duodenal cancers as well. An old procedure - elaborate - one of the biggest operations around.

Speak to the surgeon/nurse about creon & PPI. You will need a prescription for both. I have already sent you the information about how to take this. The dietitian should also help.

Its correct about nano-knife before surgery.

You can email us on support@pancreaticcancer.org.uk at any stage Hobbs.

Kind regards,

Jeni.
Pancreatic cancer Nurse Specialist,
Support Team.

PCUK Nurse Jeni
Posts: 1014
Joined: Mon Jun 14, 2010 12:30 pm

Re: Surgical Removal of Tumour

Postby PCUK Nurse Jeni » Thu Apr 28, 2016 3:12 pm

Hi again all,

I could not find any scholarly articles about Gerson therapy, but this is a very well written and balanced article taken from Cancer Research UK, a respected and well known charity across the UK.

Please see below:
http://www.cancerresearchuk.org/about-c ... on-therapy

Kind regards,

Jeni.

Pancreatic cancer Nurse Specialist,
Support Team.

Didge
Posts: 825
Joined: Sun Dec 29, 2013 10:35 am

Re: Surgical Removal of Tumour

Postby Didge » Thu Apr 28, 2016 9:02 pm

For what it's worth I will comment on the previous posts from Jeni. First, 'you won't find any conventional health professional recommending Gerson' - that is misleading. Some have experienced patients on Gerson who have done very well, so would not not recommend it if that makes sense. However, Gerson weakens a person so would not recommend a full Gerson before major surgery in any case. the cancerresearch website is inaccurate in some points. A person does not eat 20 lbs of fruit a vegetables a day - these are juiced, removing all fibre, so in fact getting a person to eat enough is sometimes a struggle. I did find with my late first husband (and yes this is anecdotal as it is our experience) that the report that coffee enemas are marvellous at pain relief to be true. He was taken into hospital 2 days before he died with multiple bone tumours (he had had to have a steel pin in his thigh bone when it broke) having never taken so much as an aspirin for pain. The hospital couldn't believe it and kept offering him morphine which he declined. However, against it, I would say that I have never found anyone who has been 'cured' of pancreatic cancer using Gerson (or any other dietary therapy) and the long time survivors seem to have the neuroendocrine type which usually means a longer life anyway. Gerson institute now work with many people who use it alongside chemo so that is a bit out of date too. However, Gerson is very very restrictive and tough. There are other regimes which might be more tempting for anyone wanting to use something else alongside other therapies/treatments. there is plenty of information out there. And if anyone is tempted to use any other dietary regimes I would say get advice and support from professionals. there are plenty of conventionally trained doctors out there who are interested in dietary approaches. Finally the comment "sometimes, as in the case of advanced disease, it doesn't do too much at all - but this is not a reason not to give chemo, otherwise if we thought "it might not work", no one would get chemo." I would alter that to "this is not a reason not to offer chemo" as the final decision has to be the patient's - not the relative's not the doctor's. I know that my partner Rob made the decision not to have more chemo for the last 2 months of his life and felt a "huge relief" when he made that decision even though I thought that, as it had worked well before, it was his best bet. But it was not my choice to make. What seems to make the most difference to people with pancreatic cancer is to be proactive, vigilant, take everything you can get in terms of treatment, add what makes sense to you to the mix if you want (research, research, research) and make your own decisions.